Discovering a new interest a dementia journey

The dementia care advisors team (DCA) are a specialist advice and information service supporting people with dementia and their families and carers, in the Windsor and Maidenhead area. DCA’s provide support, advice, information, education, therapy and work actively to help people live well with dementia. They link people to local professional and volunteer services to support them on their dementia journey.

Miriam* is 83, lives alone and has a rare form of Dementia, known as “Semantic Dementia”. With this form of the disease, initially, memory is less affected, but there is an inability to match images and words with their meanings. Miriam is supported by her daughter.

Miriam and her family have been supported by the Dementia Care Advisor’s team (DCA) to adapt during their dementia journey. The team help people to live well with dementia, linking people to local professional and volunteer services and offering advice and guidance.

For Miriam’s dementia, repeated and familiar actions, routines and environment are important, as is good communication. As the disease progresses physical and mental deterioration are inevitable, so clear, simple verbal and more importantly physical signals are needed to engage with “muscle memory.” During the time that the team have been involved, they have supported Miriam’s family, looking at day to day issues, as well as creative ways of communicating and providing stimulating activities for Miriam. This included providing the family with a dementia activity resource pack, to offer easy to follow activity ideas. For example, there was a phase where Miriam would not stay still for long and needed a lot of positive physical.

As Miriam has encountered more physical and mental challenges the DCA has adopted a Multidisciplinary Team approach to her progressing care needs. Joint visits are made by health and social care staff with everyone involved in Miriam’s care and well-being attending team cluster meetings. Belinda from the team explains; “good communication between all disciplines and with the family is vital, it needs the MDT approach to ensure the best outcomes for Miriam.”

Belinda’s advice to the family has always been, “be led by Miriam, even if it is to pastimes, preferences that are new or the opposite of what might be expected”. Miriam’s daughter was moved by the “fascinated joy” which Miriam has derived from colouring and simple drawings.

Helping to colour in the shapes and figures has calmed her, pleased her and given her a sense of task and satisfaction.” As she noted; “by letting her become a new version of herself we have actually been able to find many ways to enjoy companionship and activities well into her later stages of dementia.

Miriam now receives full time care in her own home and her daughter remains regularly involved. With the support of the DCA team she is able understand and communicate well with her mum and advises the carers on how to best care for Miriam.

The dementia journey can be long, Miriam was diagnosed with dementia two years after she first started to show symptoms. The team have been supporting Miriam and her family five years. As Miriam’s daughter explains 

It has been so important to have continuity of support when you are so run down with it all after so many years.

Belinda aims to remain advising the family and affirmed; “we often stay with people for the whole dementia journey.”